Celiac Disease experiences? Gluten free is it difficult?

[Paddlinglikehell]

DD 9 has had tummy aches and intermittent diaorea since a toddler. She has been given various Meds over the years. It tends to go in bouts, but we can't find a trigger.

In June she had it bad for several days and we ended up taking her to out of hours, a result of which she had blood tests. I rang for the results and was told all was OK. Fri., we went to Dr for something else and he told me the bloods weren't OK and they should have written to me, her levels for Celiac disease were high. Normal being 0-20, DD is 200

We have an appointment for Nov. with the Gastroenterologist.

What should we expect?, the Dr didn't say to avoid Wheat/Gluten in the meantime and how difficult is it to manage if it is confirmed?

Feeling a bit anxious at the moment. :(

you may get gluten free stuff on prescription. You will probably have to do a lot of label checking too

If she is going to have further tests you need to make sure she continues eating wheat /gluten foods in the meantime.

My ds was diagnosed with Coeliac disease at the age of 16 months in 1988 ,so we have lived with this for many years.

You will find it difficult at first but it doesn't take long to get used to the diet, especially once you see the improvements in health to your child.

You can get a lot on prescription and it is so much easier to buy GF from shops now. I would recommend joining www.coeliac.org.uk/
they have a helpline and a handy food directory book that was a life saver in our early days.

My son is now a healthy adult and he lives a completely normal life. He eats out regulary with friends as there is more awareness of the need to offer GF foods. I went to Pizza Express last night and on the menu there was GF pizza too.

My youngest ds (age 12) was recently tested for Coeliac disease, although that was negative he was found to be wheat intolerant. So he is now avoiding wheat foods.

don't take her off gluten until you see the consultant! if she is very poorly you can ask to go on cancellation list that is quite a long wait to be seen with positive blood s. there are new guidelines for children now she may not need to have that many more tests but I don't know how widely they are being followed

Thank you. I am feeling a bit calmer today, I think it was a shock, but would explain lots of things - why when she had Weetabix, she got diaorea! - why she has had tummy ache for several days at a time and why she hasn't really grown as much as her school friends. She isn't the smallest in the class, but not far off and was a big baby!

At the moment she is well, no tummy aches, so we are going through a good patch, she gets intermittent diaorea, but she has always had that. I will wait for the appointment, unless it flares up. All these years I was told it was migraines!

We haven't known abouth the bloods since June, so another month or so is neither here or there.

I have had a look at that website, a bit worried about the test on the intestine, I hope it won't be necessary :(

Thankyou.

Lots of restaurants are quite clued up now - my friend is gluten free and Wagamamas does a whole separate menu showing what she can and can't eat.

She said when she was small she always preferred things like jacket potatoes to pasta and pizza but couldn't explain why. Does your DD enjoy gluteny foods?

My daughter had to have an OGD and biopsy to confirm the diagnosis of coeliacs as in our area they're not happy to just accept blood results . My DD has always been a picky eater and most of what she ate was 'glutinous' ,however she is now GF and is ok with the fresh bread and most GF pasta is lovely . Dominos also do nice GF pizza

No!! She has never liked pizza, or pasta, which to be honest is sometimes a pain when we are out and want something quick, she hardly ever eats bread either, takes sausage out of hot dog rolls, same with burgers.

We were only saying this yesterday and wondered if it was her subconscious. We haven't said too much about it at the moment, but I did ask why she didn't like these things and she just sad 'she didn't and didn't know why'.

Favourite food - jacket potatoes and beans and roast dinner!

OP, posted this on another thread, hope it helps.

My Dd was diagnosed with coeliac disease at this age. If your DS has coeliac disease you should be referred to a dietitian and his weight and height should be regularly monitored eg every 6 months. He will also require blood tests to check his vitamin D and iron levels are ok. It is very important that he has plenty of calcium in his diet, osteoporosis is a associated with coeliac disease. Dd's dietitian recommends a serving of calcium with every meal and milk drinking should be encouraged.
My DD is 13 next week and is great with her diet although she does feel like the odd one out sometimes. She is a lovely tall, lean girl, doing well at school and very active.
You should also notice a difference in his general well being too, he will be a lot more content and happy once he is on a strict diet.
Hope you little boy gets well soon. X